Big changes are coming to patients ability to see their medical information.
Starting this month, federal rules will require that all laboratory tests, including pathology reports, imaging, and progress notes be immediately released to patients, with rare exceptions. In March of 2020 the Office of the National Coordinator for Health Information Technology published the “21st Century Cures Act” final rule that requires providers and others to not engage in, “information blocking” by interfering with the use of electronic health information. The idea of patients being able to readily see their charts is known as Open Notes.
Traditionally doctors (and nurse practitioners) notes were considered to be their property. They were paper charts, and if they sold their practice, the chart would go with it. Although they would send copies to other treating physicians, they wouldn’t necessarily give patients a copy if they requested, and they might charge copying costs.
Although ownership status legally varies by state, and is ambiguous and debated in a number of places, in practice nowadays, usually the actual chart, whether it’s paper or electronic, is considered to belong to the physician/practice, but the information belongs to the patient. That information is not always readily available to patients, particularly notes. In the case of test results, even when available through patient portals, there is often a delay. For better or worse, this will be mostly going away.
On the positive side, overlooked abnormal tests are more likely to be caught by patients, they will be able to see their results sooner, and they may better understand their condition and expectations by reading the notes about their visits.
On the negative side, there are all kinds of things that can go wrong. Let’s start with test results. At my institution we’ve had a delay set for tests, with different delays depending on the test. Over time we’ve shorted the time on many of them as we became comfortable with the process. For example, things such as blood counts and chemistry tests (kidney function, cholesterol, etc) would get released shortly after midnight. Other tests, such as pathology tests, have been delayed 14 days. That gives the person who ordered it a chance to contact the patient before they see the results online.
As a patient, would you prefer to find out that you have cancer by having your physician or nurse practitioner call you, or talk to you when you come in for an appointment, or to find out online without putting the information in context (“You’ve got mail!”)?
In some cases physicians can warn patients to get them prepared, such as informing them that although they think a breast lump is probably benign, it may turn out to be cancer, and tell them what will happen if that’s the case. But besides that they may not have time to always do this, some times the results are unexpected. For example, someone may have no symptoms but they get a routine chest x-ray to make sure it’s alright before they undergo certain surgical procedures. It could show signs indicating probable metastatic cancer, and the report that comes back to them electronically may be how they find out.
As a physician I worry about getting overwhelmed by patient requests for information regarding tests they’ve seen online. Already many ask about abnormalities that are not clinically significant, such as a low LDL cholesterol or a high HDL (both of which are generally good). I often say that abnormal doesn’t mean good or bad, just that it’s outside the normal range. I’ve had several patients starting taking calcium as a results of misinterpreting a report when they saw a low “LDL (calc)” not realizing that “calc” is just an abbreviation of calculated, and not calcium.
Patients being able to read progress notes causes even more anxiety. Even though patients already can request copies of their records, in most cases they don’t. If we do get a request we have a chance to contact them if we’re concerned about something they may read.
Besides the concern that questions will generate more work for me, I worry more about patients misinterpreting the notes. When someone comes in with various symptoms, physicians come up with a differential diagnosis, meaning the different things that might cause those symptoms. For example, if someone has a cough, it could be bronchitis, pneumonia, asthma, reactive airway disease due to reflux (heartburn), or lung cancer, among other possibilities. Those possibilities are often included in the note for several reasons. It helps the writer organize their thoughts, and reminds them what they were thinking if they (or someone else) later looks back at the note. It also provides protection against malpractice lawsuits. It’s less egregious to treat lung cancer with an antibiotic if you write that you think it’s unlikely that the patient has cancer and more likely it’s just bronchitis. Many things we may include on our differential are rare, but patients may worry if they read them.
Another concern I have about notes is information that patients may find embarrassing or otherwise uncomfortable. It may include information pertaining to domestic violence, drug use, or sexual function. Although the new law allows one to not release a particular note, it’s expected that it will be used minimally, and there are significant penalties for doing so unless you can justify that it would cause significant patient harm. I think this will lead people to modify how they write their notes, sometimes resulting in notes that are less useful for those writing them. Doctors and other providers can learn to write notes in ways that patients will better accept, but it will take practice, and won’t always be possible. Unfortunately it’s not clear if the law is retroactive, so even notes written 20 years ago may be available to be read, though currently my institution won’t do that, though the legal advice went back and forth on it (thanks, Congress, for making that perfectly clear!).
Many physicians and other medical providers who have already voluntarily gone to automatically sharing their notes have said that most people find out that despite their fears, in practice it has not been an issue. I hope that’s the case.